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By FRANK URQUHART

Scottish scientists have paved the way for potential new treatments for autism after discovering a link between the condition and abnormalities in a gene important for learning and memory.

The link was established by researchers at Aberdeen University following a study of four children with severe autism in the North-east of Scotland. They discovered that the children each had a rare re-arrangement of chromosomes that had disrupted a gene known as EIF4E.

A spokesman for Aberdeen University said: "The resulting imbalance makes the brain more prone to the repetitive thought processes seen in autism.

"The detection of a link between the gene and autism opens up a potential new target for treatment in the future."

The findings appear in the Journal of Medical Genetics.

Dr. Edward (Ted) Carr Will be Missed....

On June 20^th, 2009, I learned that my dear friend

and colleague Dr. Edward (Ted) Carr

was killed in a car accident.

By Doreen Granpeesheh, PhD, BCBA-D

CARD Founder and Executive Director

Ted was the leading professor in the Department of Psychology at the State University of New York at Stony Brook. Over the past 33 years, he published numerous papers on issues related to applied behavior analysis and positive behavior support in the home, classroom, workplace, and community. Ted lectured extensively, giving workshops in the United States, Canada, and Europe. He served on the editorial boards of 17 journals and was also internationally recognized for his research on new treatments in autism and related disorders. His work with self-injurious and other problem behaviors was instrumental in the development of functional behavior assessment, which then led to the development of Positive Behavior Support, an approach for dealing with serious behavior challenges now mandated by the Federal Individuals with Disabilities Education Act (IDEA).

Ted was Past President of the Association for Positive Behavior Support. He was a Fellow of the American Psychological Association and the American Association on Intellectual and Developmental Disabilities. Ted was also recognized as Teacher of the Year in the Department of Psychology at Stony Brook for two consecutive years, from 2003 – 2004 and 2005 – 2006.

Moreover, Ted was a widely recognized author of the best-selling book, Communication-Based Intervention for Problem Behavior. He received numerous awards, including the Applied Research Award in Behavior Analysis (American Psychological Association, 2001) and the Distinguished Research Award for Career Achievement (ARC, 1999).

I honestly cannot find the words to express the sadness I feel over the loss of such an amazing human being. Ted and I worked on several papers together and talked often. We were even scheduled to talk this week to discuss new research projects. He was full of integrity, full of energy and full of life. He was a dear friend who always made me laugh. He was truly incredible; a brilliant man with a kind heart. We chatted about life often and I always felt his support. At a professional level, he made enormous contributions to the field of Applied Behavior Analysis and was one of few behavior analysts who understood and accepted the medical aspects of autism. His death is a great loss to our community. He will be deeply missed and I pray for his family to find peace.

Read more about Dr. Carr...

DH Autism Advisor Calls On All To Help Shape National Autism Strategy At Brookdale Care Conference

As posted online at Medical News Today...

The Department of Health's Specialist Advisor for Autism, Elaine Hill, has publicly urged practitioners, service users, their families and the general public to submit their views and case studies to the Government's consultation on a National Autism Strategy at a national conference on the mental health needs of people with ASC that took place in London on Wednesday 17th June 2009 sponsored by autism care services provider Brookdale Care.

One in 100 of the population of the UK has an Autistic Spectrum Condition (ASC), yet there still remains minimal awareness of the condition, poor access to diagnosis and gaps in service provision. Such shortfalls were identified most recently in a report published by the National Audit Office, entitled 'Supporting people with autism through adulthood,' which concluded that more resources need to be invested to improve planning, commissioning and delivery of services for those with ASC. Similar recommendations have also been made in the All Party Parliamentary Group on Autism's report into transitions to adulthood for young people on the autism spectrum.

The appointment of Elaine Hill in October 2008 was warmly welcomed by Brookdale Care as a major step towards ensuring that autism receives the national leadership that it needs. Since joining the Department of Health, Elaine Hill has already made great strides in her role - issuing good practice guidance for commissioners in April this year and launching a public consultation to feed a National Autism Strategy.

Elaine Hill said today: "The Government's National Autism Strategy is now well into its consultation phase and I urge as many people as possible to contribute to the debate and share their first-hand experiences because they will help to shape policy.

"Events such as these are so important because they allow practitioners, service users and Government officials the opportunity to interact and discuss policy, practice and existing provision. Through such debate we can together agree upon common goals and plan how we might achieve them - making a huge difference to the lives of the many people living with autism in the UK."

Lesa Walton, Care & Development Director of Brookdale Care said today: "Brookdale Care is calling for more action to be taken to address shortfalls in the diagnosis and care of people with ASC. A National Autism Strategy is a great first step and we urge other service providers, practitioners, service users and their families to get involved in the Government's consultation and have their say.

"Brookdale Care wants to see more collaboration between those working in the sector and the sharing of good practice and success stories. The conference achieved this very aim and hearing Elaine speak on the Department of Health's plans and the opportunities ahead for all concerned was really helpful."

Source
Brookdale Care

Edward Carr Killed in Auto Crash

Dr. Edward Carr in the psychology building
at Stony Brook University.

BY JENNIFER BARRIOS | Newsday

A Stony Brook professor known internationally for his work on autism was killed after an intoxicated driver veered into opposing traffic and struck the professor’s car, Suffolk police said.

Edward Carr, 61, of Setauket, was driving with his wife, 58-year-old Ilene Wasserman, east on Route 25A in Wading River about 4:30 p.m. Saturday when the collision occurred.

Police said 66-year-old Michael Koss of Rocky Point was driving while intoxicated when he suddenly drove his 2004 Jeep Cherokee from the westbound lane into the eastbound lane, striking Carr’s 2000 Honda Civic.

Carr and Wasserman were airlifted to Stony Brook University Medical Center. Carr was pronounced dead at the hospital, and Wasserman was listed in critical condition.

Koss and his two passengers, 60-year-old Serena Koss, who lived with Michael Koss in Rocky Point, and 55-year-old Mary Lynch of Mount Sinai were taken by ambulance to Stony Brook. All three were listed in serious but stable condition. Koss broke his femur in the collision.

Seventh Squad Det. Sgt. James McGuinness said Koss will be arraigned when he is released from the hospital. Police plan to charge Koss with driving while intoxicated.

In a statement issued Sunday, Stony Brook University president Shirley Strum Kenny said the university was “devastated by the tragic loss of Professor Carr.” She called Carr “one of our most outstanding professors and researchers.”

Carr was an internationally recognized expert on autism, and was famous for codeveloping two widely practiced techniques for dealing with individuals with autism. Carr was a leading professor in the psychology department at Stony Brook, and served on the national panel of advisers for the Autism Society of America.

Wasserman is a licensed psychologist in New York State; records list her as having an office in Port Jefferson.

Neighbors of Carr and Wasserman reacted in shock to the news of the crash.

“We are just horrified,” said Gerald Gargivlo, who lives next door to the couple. They have a son, Aaron, who is in his 20s, Gargivlo said.

Gargivlo said Carr was a quiet, gentle man who spent his time tending to his immaculate home garden.

The couple took care of their health, often walking together, he said. They were also trusting, often leaving their garage doors of their home open while they walked.

“He would go out and clean the street, even if it was other people’s garbage,” Gargivlo said. “They were quiet people. They were dedicated to their professions.”

- With Dan Harding and Sumathi Reddy

CARD Provides Free Specialized Services to Arizona Families Thanks to First Things First Grant

**CLICK ON IMAGE TO ENLARGE**

CARD AWARDED GOVERNMENT GRANT

TO HELP FAMILIES IN ARIZONA

A First Things First grant will provide intense,

short term behavioral intervention to families in crisis.

Phoenix, Arizona – June 18, 2009 The Center for Autism and Related Disorders was awarded a $270,000 grant by the Northeast Maricopa Regional Partnership Council’s First Things First program, to provide behavioral health services to 200 families in their region. The grant was created to meet the regional need for short‐term, focused intervention for families whose children ages 0‐5 face significant behavioral, developmental or mental health challenges.

“This grant will allow us to make a significant impact on families,” says grant writer and CARD Research Manager, Dr. Amy Kenzer. “Our treatment professionals have exceptional training and experience dealing with the most difficult cases. I am confident we can give clients and their families’ the training and support they need to overcome the challenges they are facing.”

CARD’s Specialized Outpatient Services Department (SOS) will combine direct intervention services with caregiver training to provide optimal treatment for each family. The treatment process includes an intake evaluation in which the family’s abilities and needs are assessed. Given the family’s priorities, the behavior specialist will conduct appropriate assessments and develop individual treatment plans for common childhood issues. Home‐based, direct intervention will include training parents to implement their child’s behavior intervention plan. At the same time, caregivers will learn useful techniques in group training meetings conducted every two weeks. The combination of childspecific intervention plans along with group caregiver training and family support will help bring each family out of a crisis situation. If successful, this one‐year grant may be renewed for two additional years.

Families that meet certain criteria will receive treatment services and caregiver training at no cost.

General eligibility requirements:
• Children age 0 – 5 years
• Resident of Northeast Maricopa Region
• Family is in crisis due to a child’s behavioral, developmental, or mental health problems
• Children do NOT need to have any formal diagnosis (i.e., Autism) to be eligible

Common childhood issues addressed include, but are not limited to:
• Tantrums
• Non‐compliance
• Aggression
• Property destruction
• Separation issues
• Self‐injurious behavior
• Sleep dysregulation
• Feeding problems
• Toilet training

CARD SOS services will be available beginning July 1, 2009. Interested families are encouraged to contact CARD Phoenix at cardsos@centerforautism.com.

About First Things First (FTF):
First Things First (FTF) was established in 2006 to help provide greater opportunities for all children ages five and under, in Arizona, to grow up ready to succeed. FTF’s mission is to increase the quality of, and access to, the early childhood development and health system that ensures a child entering school comes healthy and ready to succeed.

About the Center for Autism and Related Disorders, Inc. (CARD):
The Center for Autism and Related Disorders, Inc. (CARD) diligently maintains a reputation as one of the world’s largest and most experienced organizations effectively treating children with autism, Asperger’s Syndrome, PDD‐NOS, and related disorders. Following the principles of Applied Behavior Analysis (ABA), CARD develops individualized treatment plans for each child. CARD provides services around the globe. CARD was founded by Executive Director Doreen Granpeesheh, PhD, BCBA‐D.

About the Center for Autism and Related Disorders’ Specialized Outpatient Services (SOS):
CARD Specialized Outpatient Services (SOS) Department uses the principles of Applied Behavior
Analysis (ABA) to develop short‐term programs designed to target one or more particular challenges such as behavior problems, feeding and pill swallowing. The goal of CARD SOS is to help individuals achieve long‐term success by developing tools to overcome these challenges. CARD SOS is designed to serve individuals with and without autism of all ages.

Study To Follow Pregnant Women To Better Understand Causes, Early Signs Of Autism

As posted online at Medical News Today...

NIH and the advocacy group Autism Speaks are enrolling 1,200 pregnant women who have other children with autism spectrum disorders to participate in a large study that aims to identify early signs of the condition and its possible causes, the Wall Street Journal reports. Women who participate in the study -- known as the Early Autism Risk Longitudinal Investigation, or EARLI, study -- will be monitored throughout their pregnancies, and their infants will be monitored until age three.

The Centers for Disease Control and Prevention estimates that one in 150 children in the U.S. has an autism spectrum disorder, which includes autism, Asperger's syndrome and pervasive developmental disorders. The study will focus on women who already have one child with an autism spectrum disorder because such women have a higher chance of having another child with the condition. Craig Newschaffer, the study's lead investigator and a department chair at Philadelphia's Drexel University School of Public Health, said, "By studying families who are already affected by autism, we feel we have the best chance at learning how genetics and environmental factors could work together to cause autism."

Autism usually is characterized by social interaction and communication impairments, as well as unusual interests or behaviors. Although there is no cure for autism, its symptoms can be improved through therapy and medication, the Journal reports.

According to Newschaffer, researchers throughout the study will collect blood and urine for DNA analysis. Samples also will be collected from the umbilical cord, placenta and meconium -- the infant's first stool -- after birth. Infants born during the study will be provided with a series of developmental assessments, and older siblings with autism also could receive assessments to confirm their diagnosis (Corbett Dooren, Wall Street Journal, 6/9).

Reprinted with kind permission from http://www.nationalpartnership.org. You can view the entire Daily Women's Health Policy Report, search the archives, or sign up for email delivery here. The Daily Women's Health Policy Report is a free service of the National Partnership for Women & Families, published by The Advisory Board Company.

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As posted online at Medical News Today...

Most doctors need more training to spot the signs of autism, according to a new report.

The study, from the National Audit Office, also found that around half of the estimated 400,000 adults in England with autism may be falling through the gaps due to a lack of services.

This is because they do not have a learning disability and services are mostly set up for people with illness, physical or learning disabilities, and mental health problems.

For more information about autism, visit www.centerforautism.com.

BREAKING NEWS: U.K. Autism Study Finds Prevalence one in 64

U.K. Autism Study Finds Prevalence one in 64
By: Carin Yavorcik

Autism Society Welcomes New Study
and Calls for Continued Focus
on Supporting People with Autism in America

A new study by researchers in the United Kingdom finds that the prevalence of autism in that country is much higher than previously thought. The current estimate of autism in the U.K. is one in 100. But the new study, led by Professor Simon Baron-Cohen of the Autism Research Centre at Cambridge University, found that for every three diagnosed cases of autism, there are two that are not diagnosed meaning the true prevalence in the U.K. could be as high as one in 64. The Autism Society applauds this research and hopes to see similar studies done in the United States to help address the comprehensive need for services to support individuals with autism across the spectrum.

“The data from this British study reflects what we are also seeing here on the ground in America,” said Autism Society President and CEO Lee Grossman. “We believe the incidence rates here are approaching those in the United Kingdom. In the U.S. educational system, states are reporting higher prevalence even with coding differences among states. There has been an unanswered and urgent need for services and supports for people with autism for decades, and we need to act now to serve.” Mr. Grossman is also a public member of the Interagency Autism Coordinating Committee of the U.S. government.

In the United States, where current estimates place the prevalence of autism at one in 150, the Autism Society hears from many families whose children still have difficulty getting a diagnosis and adults who have never been identified. Reports from the state of Indiana indicate the current rate of identification in students is one in 101, and does not include children who are home-schooled or educated in private institutions, according to the Indiana Resource Center for Autism. The U.S. Centers for Disease Control and Prevention are expected to release updated estimated prevalence rates this year.

“Perhaps the most important issue raised by the Cambridge study is not simply the higher prevalence rate of autism but, rather, the tremendous heterogeneity in its expression,” said Dr. Edward Carr, Leading Professor, Department of Psychology, State University of New York at Stony Brook and a member of the Autism Society’s Applied Research team. “That means that more and varied resources will be required to do full justice to the wide range of support needs across the spectrum from severe, incapacitating disability to subtle yet challenging forms of the condition.”

The study was school-based, with researchers sending diagnostic surveys to the parents of 11,700 children ages 5-9 in participating schools. Based on the scores, children were brought in for further assessment, with researchers finding a number of undiagnosed cases.

“This research, conducted by prestigious and ethical researchers, should generate a call to action across schools, universities, community agencies and others who will be tremendously impacted by the rising numbers of individuals with autism spectrum disorders (ASD),” said Dr. Brenda Smith-Myles, Autism Society Chief Program Officer, a member of the Society's Applied Research team and one of the world’s most-published applied autism researchers. “Today, the best options to ensure optimal outcomes for individuals with ASD are education and multi-faceted supports for home, community, and employment success. All who teach and support individuals with ASD and their families must understand the complex nature of the disorder and be educated on how to provide multi-faceted, comprehensive services that will serve their long-term needs.”

“These numbers are very concerning. It is hard to believe that this many people with autism have always been among us,” said Dr. Martha Herbert, Assistant Professor of Neurology at Harvard Medical School, a pediatric neurologist at Massachusetts General Hospital and a member of the Autism Society’s Applied Research team. “It is both prudent and pressing to look for environmental reasons for these dramatic figures. Perhaps there is something we could be doing differently that could help prevent some of the suffering that comes with this level of need.”

There are several bills currently active in U.S. Congress that could help address these needs, most notably the Autism Treatment Acceleration Act, a comprehensive bill that would provide for adult services, care centers, national teacher training and health insurance. Learn more about this legislation and others at our Take Action page.